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The Patients' Book: How to Survive in Today's Medical System

McCray, Sandra; Hartman, Diane

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ISBN 10: 0967864739 / ISBN 13: 9780967864730
Editorial: Sandra McCray & Diane Hartman, 2000
Usado Condición: Near Fine Encuadernación de tapa blanda
Librería: Bingo Used Books (Vancouver, WA, Estados Unidos de America)

Librería en AbeBooks desde: 24 de octubre de 2002

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Trade paperback in near fine condition. N° de ref. de la librería 92904

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Título: The Patients' Book: How to Survive in ...

Editorial: Sandra McCray & Diane Hartman

Año de publicación: 2000

Encuadernación: Soft cover

Condición del libro:Near Fine

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If you or someone you love is about to begin a medical "journey," you will do well to take along The Patients' Book as your guide.

These are scary times for patients. Recent reports and statistics about hospital and drug "mishaps" are alarming. A modest estimate from the National Institute of Medicine shows that nearly 100,000 people die each year from medical errors. Another report indicates that the FDA has "no quality control system" to detect dangerous side effects from prescription drugs.

The Patients' Book was written by two patients who have had extensive experience with hospitals and doctors, and who have spent years talking to doctors and other patients. It is designed to help you to find the best treatments from an imperfect medical system. We give you advice on how to get a diagnosis and what to do after you have it. We show you how to research your illness and how to build your "medical buddy" support team -- both crucial elements in your survival. Real patients' stories will warn you against specific dangers, give you courage, and fill your spirit.

Written in a clear, straightforward style, The Patients' Book is an invaluable resource for patients, their medical buddies, friends, and families.

About the Author:

Sandra B. McCray. Sandy is a retired lawyer and the founder and Executive Director of Colorado HealthNet. She works as a full time volunteer for Colorado HealthNet.

"In large part, this is a book about Colorado HealthSite, an electronic health information service for people with chronic illnesses. My partner in this book, Diane, and I met on Colorado HealthSite.

Colorado HealthSite arose out of my experience getting through a serious illness. I was born with kidney disease. Although the disease caused constant urinary tract and kidney infections, sometimes requiring hospitalization, I never understood that I had any role in the management of my disease. I now believe that my passivity contributed to the loss of my one fairly good kidney, leading to a kidney transplant and two total hip replacements. It is true that my doctors failed to ask some important questions and did not listen as well as they should have. Yet, what I have learned is that once I finally decided to take control of my health, I found wonderful doctors.

In Chapter 5, I recount my story before I became an involved patient. My story today is very different. In my fifties, I started reading and researching about kidney dialysis and transplant. That my life is good now is due to several things:

1. The wonders of modern western medicine, which gave me a new kidney when my last one failed.

2. Harsh, but effective, pharmaceutical drugs that reversed my body's initial rejection of my new kidney and still continue to suppress my body's immune system so that it won't reject the kidney again.

3. Modern medicine that gave me two new hips when the anti-rejection drugs caused avascular necrosis, collapsing both of my hips.

4. My personal decision to be an active partner in my health care.

As I became a more involved patient, I began to tell my doctors that I wanted to be a partner in my care. Most responded positively. I left those that didn't. Two surgeons and one generalist stand out in my mind today. I chose the surgeons only after meeting with them and asking the questions I drafted after lots of research. Dr. Arthur Matas and the team at the University of Minnesota kidney transplant center always had time to answer my questions before and after my transplant. They taught me how to read my own blood tests to monitor the function of my new kidney. They saw me through a nasty rejection "episode." Dr. Eric Johnson at the UCLA orthopedic surgery center spent several hours with me before my hip replacements carefully answering the questions that I had marked in my big book on hip replacement from the National Institutes of Health and did a superb job of replacing my hips. I also have a very special "gateway" doctor. Dr. Sharman Hurlow is a careful listener and excellent clinician who is not reluctant to call in a specialist when necessary.

At the time I was facing the loss of my kidneys, there was no book telling me how to research my illness, how to ask questions of my doctors, how to get a diagnosis, how to learn about my medications. There were no web sites to help me find information and support groups. Diane and I wrote this book to enable you to do these things.

Diane Hartman. Diane is a former journalist and educator and now works in public relations.

My medical problems are minor compared to Sandy's. Not all my experiences with the medical profession have been wonderful.

I met Sandy when I looked at Colorado HealthSite and was so impressed with what she has done. I was curious about any information she had about hip replacements. It's been hard to get information from doctors about what I can and can't do since this operation.

We became friends and soon talked about writing this book together. I wanted to be a part of it with the hope that I would learn to do what we're writing. Too often, I've been afraid to question the judgements and opinions of doctors. I've had doctors who treated me as an equal, were kind and gentle, helped me educate myself and some who actually encouraged me to talk. I've had doctors who were sarcastic, arrogant, condescending, careless and incompetent. I now know that my own preparation and my own attitude can make a huge difference in what happens to me.

I firmly believe that we're in a different era of health care and that we're certainly not going back. Nobody cares as much about my health as I do, and if I don't take responsibility, nobody else will.

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